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Diary (9) – Please, help!

I have Down Syndrome… What then?

Dear friends and readers,

Positive things first.

Your reading and writing comments or a “like” was a surprise for Dr Quack and the local Red Tape. As a consequence, a gardener has come twice and spent five hours and a half in the garden, pruning the demented wisteria, several offshoots of cherry trees, walnut trees, oak trees, making big piles of branches, and cutting part of the grass. A cleaning party is now decided for the 21 July – the whole day with three or four ladies and the gardener to move furniture and book boxes around.

Why is that the consequence of your action, will you ask? Because it is the first time they all here encounter an international public mobilization. You have a weight.

Thank you.

Thank you for your advice as well.

And where is The Little Family?

Anne-Fleur is sick at night. She is still scared to be torn from me. She stressed and strained. Every night she wakes up and is sick before she reaches the loo. She goes under the shower. I clean her. I clean the floor. I put her back to bed. I hug her. I rock her. I try to send her back to sleep, telling her that things will be well.

As to me, after asking various French organisations reputed to help handicapped persons and their families, I am back where I started.

No one has been able to tell me if “carers” existed in France. If they exist, which seems more and more dubious, do they receive a remuneration? This seems even more dubious. Should I have a “compensation” for taking care of Anne-Fleur? Who knows? No one. Each organisation tells me to ask the other. And they send me back where I started.

Meanwhile, I know now – and this was something that I was not intended to know: the person who said it was sorry to have done so -, I know that The Shopping Lady is paid €20,80 per hour to go shopping with Anne-Fleur. And she has told me she does not like it.

If I do a quick calculation, what might I earn? €20 x 8 hours (I will not count the night hours and the meal hours and part of the “being together” hours; I make it an ordinary working day). That makes €160. Shall I make a monthly estimate, taking out the weekends? Let’s say I work 20 days a month: €160 x 20 = €3.200.

This is not bad. Even with half the amount, I would be happy!

But this is a dream.

Even for my lawyer, this is no legal issue.

As to my being declared mentally handicapped, this something that is never ever talked about. Never ever mentioned. Therefore, it is never said whether Anne-Fleur would remain with me or not.

It seems that the handicapped persons like Anne-Fleur are dealt with by our society when they are children. Then, when they become legally adults (in France, when they are 18), they are declared mentally handicapped, given an allowance, put under guardianship, and, most of the time, steered towards a job, staying with their parents while these are able to take care of them. When the mentally handicapped person grows old, she quits her job and her aged parents (or these die), and she is steered again towards a paid family who will take her on board, or towards a specialised institution until his/her death. There seems to be no one from the family after the parents. Brotherly or sisterly care? A void.

What am I to do?

I will need you again. Please, show that you read this blog. Please, tweet it. Please, re-blog it. Please, put it on Facebook. Please, make it known on the social media. I do not want to lose Anne-Fleur and Anne-Fleur does not want to leave me. We want to stay “The Little Family”. So, please, SHOW YOU CARE. You may make the difference when I write to our MP, to the minister in charge of handicapped persons, and to the media.

Compared with the Brexit, with the wars, with the refugees, with elections, with democracy, with all the noise and the rush of the world, we are a wisp of straw, a mere nothing. However, the world, the countries, the nations, democracy – all this is made of wisps of straw, of mere nothings.

Thank you very much! It is such a comfort and it will be a help. It has already been a help since positive things are happening. But the absurdity of texts and procedures, as well as reactions from “authorities” are disconcerting, amazing… And I am sure we are not the only persons in this situation. Which is even more absurd when I get no answer.